I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: General Discussion => Topic started by: monsterman on April 20, 2009, 10:23:31 PM
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Hi all I am only 4 weeks into Dialysis I have a CVC about a week ago I noticed the nurse had to swap the Red Line for the Blue Line. I questioned it and she just said my flow rate was lower in the Red line. Anyhow now these past few weeks my blood pressure when I get there is fine 110/70 or so but once they hook me up it drops to 60/50 sometimes a little lower then that. I dont feel to bad laying there in the chair but they wont let me move or sit up or anything. It usually takes a good half hour to get my blood pressure back up to normal once Dialysis is all over with.
Does anyone else go through this kind of thing? Is there anything I can do or look into to fix this? I havent seen my doctor yet but plan to ask him a lot of questions. I have been trying to do some research on line but I am unsure what to really look for..
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Hopefully things will change sooner or later.
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What is a CVC? I'm only 2 months in to dialysis, so I'm still learning.
My problem is somewhat similar to yours. For the last 2 weeks, my bp has actually been starting out very high (nothing new for me though) at around 200/110. But it starts dropping pretty quickly during my 3 hour run. I end up crashing before I'm even half done, with my bp dropping to around 90/50. I just posted about it on IHD somewhere. Someone mentioned something about a sodium drip. It is basically the saline drip without the extra fluid. Ask your nurse whether they can give you one at the beginning of your session (or during the entire run) in order to get your bp up higher. I finally remembered to ask my nurse about it after I was already removed from the machine, so they are going to try it if I need it starting tomorrow.
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Things to look into -
Dry weight is the first thing, and it really is no more than an educated guess. It might take a while to get it right. Have you gained weight? Are you eating more now that you've been on dialysis for a while? Are you wearing anything different -heavier boots or shoes, jacket, etc. . .?
Are you still on blood pressure meds? Are you taking them before you go to dialysis? Over the first year of dialysis, I was slowly taken off all my bp meds and haven't been put back on any since. After I stopped the last med, I actually dropped my dry weight quite a bit. My blood pressure had been kept too low by the meds to actually get down to my real dry weight.
Are you eating a snack while on the machine? I find that my bp drops if I eat. Others on here have noted that their bp drops if they don't eat. Find out what happens when you do eat, and figure out what works best for you.
Ask the nurses about the sodium setting they are using on your machine. Upping it may help, but be careful - it may just make you so thirsty that it drives you crazy.
How are your fluid gains? Some people seem to have a set amount that they can take off before they crash, regardless of how much they have on. When I was doing Nxstage, I couldn't take off more than 2.5 without crashing, regardless of how much I had on. Higher fluid gains make it more likely that you will crash during a run. It takes time for the body to redistribute the fluid from the body tissue back into the blood stream.
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No blood pressure meds here.. My dry weight I dont think they even know really what it was or is or supposed to be.. I was really sick and in bad shape when my kidneys finally crapped out for good. Before Dialysis my kidney function was around 10% but I also have had Gastroperesis for over 8 years. So I lost a lot of fluid. Going to the bathroom 10+ times a day can do that to you..
Now that I am on Dialysis I am eating more, not running to the bathroom so much "that has actually improved amazingly" and I am eating a lot better now as well. I also get IDPN each Dialysis as well "IV Nutrition" I do not retain fluid at least not right now with all the chronic bathroom visits about 3-5 per day sometimes more. I have finally talked them into not taking any thing off either. Maybe .5 or 1.0 I am still learning I am guess thats liters?
I came in on Monday at 50 Kilo's and left out at 49.6 so they arent taking off much if anything at all. They stopped adding in the IDPN to the calculations as well.
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My daughter crashes when they take off more than 1500 ml. Yesterday, they took off 3000 ml and I saw her turn pale as a ghost and they had to start pumping fluid back on her. They normally have her on a machine that shows, graphically, how much fluid is being pulled off of her, but yesterday she was not hooked to that machine. I would ask if you can be hooked to a machine that shows if they are pulling fluid off of you. Dropping your BP that low can't be good. Good luck. Please keep us informed. :grouphug;
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THD - What kind of machines does Jaclyn's center use? I didn't realize there were machines out there that didn't have profiles. I'm very surprised that in this day in age, there are machines out there that don't.
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I am also getting IV Nutrition at the same time I do the Dialysis at the Center so I have also managed to put on around 12 pounds to date.
Hi monster,
I stole this quote out of your intro thread. You said (in this thread) that they are taking 0.5 to 1.0 kg off of you. For perpective, that's 1 lb to 2 lbs, 1/2 quart to 1 quart. At the same time, you say you are gaining real weight and you do not retain fluid.
Dialysis staff are creatures of habit. They don't seem to understand that for some (perhaps a limited few) they need to take off NOTHING. You seem to be such a person. As new as you are to dialysis, get your nephrologist aligned with you and get him/her to tell the clinic how much to take off of you and alert them that they are to expect to be raising your dry weight as long as your good nutrition and real weight gain continues.
As soon as you're comfortable with it, YOU start telling them what to take off.
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I was having the same problem so I now have no weight taken off at all. I generally drop a kilo between dialysis sessions so I drink a lot at dialysis and now they are saying if I can't drink more they are going to have to give me fluid during dialysis. Tad odd really!!!!
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@ aharris2
Well its funny you should post this comment today. I saw my doctor this morning. I told him that they needed to bump up my dry weight. We didn't add in my IDPN this morning, they also DID NOT remove any fluid from me today. I came in @ 50.1 kilo's and left out at 49.6.. I felt great all day and am still feeling good. I don't think as you said they had my dry weight correct. I mentioned that before I found out that my kidneys were failing I had lost quite a bit of weight, I spent almost 2 weeks total in and out of the hospitals before my kidneys finally shut down for the last time and I started to begin to get toxic. By that time I was 97 pounds so technically speaking y dry weight was never really SPOT ON..
I will continue to keep tabs on what the nurse's set me up for each Dialization and if something needs to be changed I will voice my opinion. I am not quite sure how it would get worked but if I "disagreed" with my treatment that particular morning would they go by what I told them to do or would they have to call the doctor or not allow me to tell them what to do treatment wise? I am all new to this game and I do not want to cause issues with the techs and nurses but I also don't want to feel like crap when I should be doing and feeling better with all that I am going through on a daily basis..
What do you all think? Am I heading in the right direction? This makes me more and more want to do this all from home on my own so I can manage everything myself.. I hate not being in control ..
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You are the patient, so you are the boss. They are there to make sure you get the best treatment possible, and if that means you have to argue with them, do it. I caused a huge ruckus the very first day when i was transferred from the hospital dialysis clinic to the outpatient clinic. The new clinic completely ignored the protocol the hospital had set for me. It took us a month at the hospital to figure out what worked and the new clinic ignored it. I ended up very sick and in pain, so I definitely spoke up. Don't be afraid to speak up. This is your health and life we are talking about!
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Well it was another week of hell in Dialysis for me. I am so glad the weekend is finally here. I got shafted all week, my favorite nurse/tech hadn't been in and she wasn't on my side of the room on Friday. I managed to get a good enough Tech though on Friday who listened to what I had to say. I told her not to take anything off and she didn't. But again my blood pressure dropped very low. The lowest it got was 60/53 and they would not let me leave for an entire 45 minutes after I was done with Dialysis. They didn't even want to unhook me. They ended up giving me almost 1 entire bag of saleen/sodium through the IV access. They had me playing musical chairs during the entire time too.
Had me standing up for a minute to see how I felt and to monitor my blood pressure. Luckily I don't drive myself to Dialysis I take a Medical Transport so I don't have to worry about getting home for the most part. But I tell you this entire week has really wiped me out. I called my Neurologist today and spoke to my main doctor. I explained all that was going on this week and he agreed that I was coming off to "light" said he would bump up my dry weight and make changes in the orders for me. So hopefully next week will be better at least I am hoping it is. I thought we were supposed to feel good once we got on Dialysis not the opposite..
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monster, a lot of dialysis machines take off low levels of fluid even when set to remove nothing at all. I'm not sure I understand the mechanics enough to explain it, but there's something in the cleaning process itself that takes fluid away from the blood. Setting the machine to 0 may still leave you drier than you started.
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monster, a lot of dialysis machines take off low levels of fluid even when set to remove nothing at all. I'm not sure I understand the mechanics enough to explain it, but there's something in the cleaning process itself that takes fluid away from the blood. Setting the machine to 0 may still leave you drier than you started.
Yeah I read that on here in another post, my doctor advised me to ask them to hook me up to a bag of saleen to just give me some extra fluid to hydrate me while on Dialysis if I am still going ot come of "light" I will find out more on Monday and plan to speak my mind! I am tired of coming off light, cramping and feeling like a BIG RIG rolled over me.
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I was having the same problem so I now have no weight taken off at all. I generally drop a kilo between dialysis sessions so I drink a lot at dialysis and now they are saying if I can't drink more they are going to have to give me fluid during dialysis. Tad odd really!!!!
omg that's some weird crap you have going down there!!! That would be hilarious if it wasn't serious for you. Just too bloody weird...
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monster, a lot of dialysis machines take off low levels of fluid even when set to remove nothing at all. I'm not sure I understand the mechanics enough to explain it, but there's something in the cleaning process itself that takes fluid away from the blood. Setting the machine to 0 may still leave you drier than you started.
Yeah I read that on here in another post, my doctor advised me to ask them to hook me up to a bag of saleen to just give me some extra fluid to hydrate me while on Dialysis if I am still going ot come of "light" I will find out more on Monday and plan to speak my mind! I am tired of coming off light, cramping and feeling like a BIG RIG rolled over me.
Monsterman, the beginning of dialysis can be rough physically and this dry weight thing is a big reason why. It will get better because you will get it figured out. The fact that you are gaining real weight (meat weight, not fluid weight) means that you will have to be more assertive because of the techs' mindsets - it messes with the techs' minds and they don't grasp that you need to come off progressively heavier each time until your real weight stabilizes.
You've asked them to remove no fluid. As jbeany said and your doctor addressed, taking fluid off is part pf the process and by hooking up that bag of saline, fluid can be put back a little at a time during the course of the treatment. When we have needed to come off at the same weight, the tech added back fluid at half hour intervals (100mls each time I believe, but your own staff should know what needs to be replaced). What's important is that the fluid is replaced at intervals during the treatment, not all at once at the end. At that point the damage is already done - the low blood pressure, the cramping and the day long washed out feeling.
Also, be aware that you yourself can add back fluid during your treatment - bring a beverage in with you (a half-pint to a pint is approximately 250ml to 500ml or 0.25kg to 0.5 kg) and sip it during your treatment - start early, don't wait until you are feeling bad. Just be sure that the staff does not make an allowance for it when they set fluid to be removed. ("Oh Mr. Monsterman, I see that you have a beverage... Would you like me to take off an extra 0.3 kilos for that? Not no, but hell no!!!")
:beer1; Drink up!
(I think they're pints, but the beer might be frowned upon in-center ;) )
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Hello Everyone
Well I took all of your replies, advice with me this morning to Dialysis.. I decided today was going to be the day I ran the show.. I told them to increase my dry weight, not to take anything off and to even give me some IV Fluids.. They did everything I asked and I cannot say how much better I feel today. I feel as good if not better then I did when I had my first 4 treatments while in the hospital 2 months or so ago.. I think I am now on the right track.
My dry weight was 47 I had them bump it up to 50.. It made NO sense to me to keep it lower then that. I know for a fact I am not retaining any fluid anywhere in my body!! My Gastroperesis has me running to the bathroom so often and its all liquid that there is NO way I have fluid hiding anywhere in me at any given time! Anyway so Dialysis really went well today. I also started taking a Binder that did not agree with my stomach I was sick all weekend. I told them today I was not taking that stuff anymore. It was called Calcium acetate needless to say with my stomach issues that stuff did not agree with me. So I am back to taking 2-4 Tums with each meal on top of my other meds etc..
My blood pressure evened itself out today as well. It started off a little low but pretty much held its own thoughout the entire Dialization. I was happy to see that today thats for sure. So needless to say I had a pretty good day and its still showing because I am still up! I've bee up since 4am Monday morning and its now going on 4am Tuesday wow I had better get to bed huh??
Well at least I can sleep in today right NO DIALYSIS :D
("Oh Mr. Monsterman, I see that you have a beverage... Would you like me to take off an extra 0.3 kilos for that? Not no, but hell no!!!")
:beer1; Drink up!
(I think they're pints, but the beer might be frowned upon in-center ;) )
What kind of drinks are we talking about?? :beer1;
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hey great news MM. Take charge and glad it's working out better for you and they didn't fuss about it. I always like to remember the saying "it's your body" (or in my case, it's mine) if anyone wants to question what I want.
Hope it continues to work out better for you!
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:cheer:
I love it when we can help someone take charge and get things done right!
Monsterman gets to use the big stick! :Kit n Stik;
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That's fantastic news monsterman!! Just remember to keep fighting if you need to! :boxing; My stupid clinic keeps trying to change my settings. At every treatment I have to call them on it. It gets old.
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Well I havent been able to get on here in awhile but my computer is back up so here I am. Dialysis is finally going good for a change. The techs and the doctors all listened to what I had to say. And guess what this entire time while they were taking off they should have either left me alone or just put some fluid on me. I was getting dehydrated this entire time. Not only from the Dialysis machine taking off the fluid but from my Gastroperesis and chronic running to the bathroom. I guess it took them long enough to figure things out and finally listen to me but they have been doing good in regards to what I think I need and want. Its been about 2 weeks of great Dialysis now.
I come in feeling a little tired and dragging but I leave feeling 10 times better then I did when I walked in. They cant take nothing off so I end up losing about .5-.8 in fluid. But along with the IDPN I get with each treatment I dont think I really notice anything. My blood pressure has since gotten much better also I run around 110/70 or so give or take a few digits just depends on how my day/week or night had gone prior to going in for treatment.
I had my arm access consult today. I am going to go ahead and go with the Fistula it seems like my best bet. I am going to have it done in Great Neck NY by a really nice doctor. His name is Dr. Penetta and he works out of Axcess Inc.. I go in for my surgery next week they will call this week to give me a day and time. Sounds like its going to be a walk in the park at least for him. I am looking forward to getting the port out of my neck though thats for sure..
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:cheer: :bandance; :cheer:
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Glad things are going better for you!
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What kind of drinks are we talking about?? :beer1;
How about a little champagne to celebrate? Good to see you back and doing better with dialysis.
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:2thumbsup;
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Are there any dialyzors out there who always have low blood pressure as the norm?
Not to freak people out, but I start in the low 80's/50's. My bp drops into the 70's/50's and it's not uncommon to drop into the 60's by the end of the run.
I feel ok. Some times I get some ear popping and do a saline flush. It's not a dry weight issue because even when I skip a day and have plenty of fluids, I still start my runs with bp in the low 80's/50's.
My nurse gets concerned because she's not used to seeing bp so low but she also trusts me to know my symptoms. As a matter of fact, my bp right now as I sit here dialyzing is 68/49.
Anybody else out there like this?
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My nurse gets concerned because she's not used to seeing bp so low but she also trusts me to know my symptoms.
Nurses have a limited knowledge.
ProAmatine (Midodrine) might help.
Please speak directly with your Nephrologist soon.
8)
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Sort of. mine starts out really high, but drops very low about half way through. I'll start out at about 200/115, then crash to around 90/60 within a 15 minute time frame. Mine isn't a dry weight issue either. Some days Ii can make my dry weight and some days I can't get anywhere near it. No one can explain it either. They can give me a 'sodium push', which is basically the saline minus the extra fluid. I have avoided it since the first time I got it because it makes me unbelievably thirsty and I feel like I've licked a salt lick.
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Before my run today my sittiing bp was 66/42 and standing was 66/53. I was dizzy all day whenever I stood up (or any slight change in elevation). I'm a little over my dry weight but I'm not taking any fluids off this run because of the low bp.